Trial News & Events

29th International Symposium on ALS/MND

The 29th International Symposium on ALS/MND was held December 7th – 9th in Glasgow, Scotland.  The ALS/MND Symposium highlights the latest scientific discoveries and advances in ALS research and care, while also providing a space for the cultivation of new international collective research efforts.  Participation in the events demonstrates the global commitment of attendees to make a difference in the fight against ALS and motor neuron disease.  Over a dozen NEALS members chaired the daily sessions over the three-day event, and 15 members presented platforms during the meeting.  Of the more than 500 posters presented during the event, over 60 were submitted by NEALS members.  You can find all of the abstracts from the Symposium here.  The abstracts are available open-access and are all free to download.

Among the presenters were:

Robert Miller (Defining ALS/MND: The Big Debate; Randomized phase 2B trial of NP001, a novel immune regulator, in ALS)

Clive Svendsen (Modelling ALS using induced pluripotent stem cells combined with organ-on-chip technology)

Benjamin R. Brooks (Novel composite endpoint extended analysis during extension of ibudilast phase 1A/2B clinical trial better predicts post wash out survival)

Hande Ozdinler (Upper motor neurons with TDP-43 pathology from different species display similar cellular dysfunctions

Richard Smith (Computer assessment of speech in a successful ALS treatment trial)

Jeremy Shefner (ALS patients can measure their own function at home: Reliability, tolerability and relationships between outcomes

Emily Plowman (Impact of a combined expiratory and inspiratory respiratory strength training program in ALS: Results of a randomized sham controlled trial)

Michael Benatar (When does ALS begin? Insights from serum and CSF neurofilaments light and heavy)

Hiroshi Mitsumoto (Primary Lateral Sclerosis (PLS)-specific PLSFRS reveals significant clinical changes over time in patients with PLS)

Nimish Thakore (An examination of riluzole effect on transitions from state to stage in the PRO-ACT cohort; Gastrostomy, rates of decline of ALSFRS-R subscores and BMI, and survival)

Carlayne Jackson (Measuring rate of decline in pulmonary function in ALS: Results from the ALS Nutrition/NIPPV Study Group

Angela Genge, MD, FRCP(C) of Montreal Neurological Institute and Hospital received the prestigious Forbes Norris Award.  This award was first presented in 1994 by the International Alliance of ALS/MND Associations to recognize excellence in the ALS/MND community.  It honors the memory of Dr. Forbes "Ted" Norris (1928-1993), a neurologist who dedicated his career to helping people with ALS/MND.  The purpose of this award is to recognize a combination of two important qualities: management of and advances in our understanding of ALS/MND, to the benefit of people living with the disease.

NEALS members met on December 9th in Glasgow for a presentation on plans for an ALS Platform Trial through the NEALS Consortium.  The discussion was co-led by Drs. Sabrina Paganoni and Merit Cudkowicz (Massachusetts General Hospital).  Platform trials are an innovative approach to trial design and enable concurrent testing of multiple drugs, using specialized statistical tools for allocating participants and analyzing results.  They have already proven successful in oncology and are rapidly being adopted in several fields of medicine, including neurology.  This effort is timely as the ALS field has seen a growing pipeline of therapeutic candidates and advances in genetics and biomarker development.  The Platform Trial will be launched at NEALS in 2019; it will include promising biomarkers and novel endpoints and will be a source of data and samples that will inform the design of future trials.  Multiple agents will be tested using an efficient and informative early-phase design with increased access for people with ALS.

If you would like more information, please join the PI webinar planned for Friday, January 25, 2019 from 10-11 AM EST.  Please email Carly Allen at for the webinar registration link.  If you would like to join the trial design committee or drug selection committee, please email Drs. Paganoni and Cudkowicz.

Of note, the Platform Trial will leverage the existing NEALS Central IRB.  If you would like your site to join the NEALS Central IRB network, please email Catherine Gladden at

The 30th International Symposium on ALS/MND will be held in 2019 in Perth, Australia.